sfr100

Hi! Are there any older POTS women on board who have been given a hormone replacement therapy patch to stop hot flashes and did they think that helped or hurt their POTS symptoms. I've just been given a patch 3 weeks ago to help me sleep better and I've seen a lot of posts where people feel their symptoms are better when their periods are stopped. The patch is starting periods again so I'm wondering If I'm better with or without HRT. Any ideas?

Does anyone else feel pressure in their chest and that their legs feel like lead when they get up from sitting?

Susan

Sorry for the flood of questions but I'm curious about some things that have been mentioned to me as possible helping. Someone told me that hikers sometimes use Chia seeds to help keep themselved hydrated as the seeds retain 10 times their weight in water. Has anyone tried these and are they safe? I called the health food store and they don't sell these like they do flax etc. More pie in the sky? Susan

Has anyone tried Jin Shin ( a form of accupressure) for POTS symptoms and had any Luck?

Susan

I tried midodrine with similar BPs and tachycardia over 100 also. I have had low blood pressure, but I am on .4 mg of florinef so it keeps it relatively normal. But my doctors didn't seem to have a problem trying the midodrine with normal BPs. My theory is that the HR is high to maintain the BP, and so a vasoconstricter like midodrine would help the blood vessels constrict more efficiently, and the heart wouldnt have to pump as fast to keep the BP up. But I know supine hypertension is a concern with midodrine. My suggestion would maybe be talking to your doctor about starting a really low dose and monitering your BP. For me, midodrine didnt work and just gave me side affects, but I know it has really helped others. But BP should be monitered with midodrine. Are you bed ridden, or are you able to function a little bit? Because I know you can't take midodrine before you go to bed so that your BP isnt too high, so if you are always in a supine position that may be the concern of your docs.

I'm able to function somewhat, so I am not lying down for most of the day. I'm sitting up and can take a short walk or do an errand.

Hi,

I'm new and have a question. After my tilt table test my the electrocardiologist said proamatine would be good. But then my internist and him are worried about raising my blood pressure too much and not letting me try the drug. They said it was for people with low blood pressure. I thought it was only supposed to raise your supine blood pressure. My blood pressure has been running about 105-113 and about 105-120 standing up even though standing my HR is ove 100. Does this eliminate me from trying this med?

Thanks. Susan. Or could I cut out florinef which I take .1 mg with salt and water which is already probably raising BP?THANKS!

I made my appointment in December and can't get in to see him until June? Any ideas for a faster appointment too?

tremulous feelings when upright. Is there any medication that can get rid of the tremors that run through your body when you've been upright for awhile. Thanks for any help on this. Susan I don't know if I'm posting right.

Hi I'm trying to see Dr G but couldn't get an appointment until 6 months. Any ideas about how to get in sooner. I've tried calling about cancellations. Thanks. Susan

I've taken Klonopin 1mg at bedtime for a couple years. My doctor says although it doesn't make me sleepy, he says it gives my nervous system a rest. I take it around 10:00pm and am still awake at 3:00am. I take Xanax also during the day. I've taken Xanax for 13 years 2-3 times daily. When you feel so bad, becoming addicted to something if it helps is the least of my worries.

Dawn

Dawn, how did you know your Pots is the adrenergenic kind and how does that affect treatments and other medications. Thanks. Susan

Hi and thank you everyone for replying to my post. Once I get over this cold I am going to start the Florinef. I am supposed to take .1MG once a day, in the morning.

I am also wondering if it has to be discontinued if you get a cold, etc. or not!? Anything else you'd like to add, feel welcome. Thanks again!

Jacquie

Does florinef need to be taken in the morning or does it matter. Does it cause sleeplessness at night or does anybody split doses?